Real patient empowerment begins with data

A new pro-patient movement is emerging through access to one’s own medical data.

I’m writing to start a conversation. One about how to make health care better, by putting the power of science in patient’s hands. Join me with your stories, your rants, and your ideas.

In the innovation atmosphere of Silicon Valley last week, about a thousand leaders of the precision medicine industry gathered to talk about the latest advances at the 10th meeting of the Precision Medicine World Conference. Everyone there was intent on bringing more science to bear in diagnosis, treatment selection, disease monitoring, and even disease prevention, all to customize care strategies for every individual.

The speed of advancement of technology and science in medicine is breathtaking.

Yet, what the conference just barely touched upon was the stories of patients struggling to obtain the innovative treatments they most desperately need.

These are stories of patients facing life-and-death decisions, and somehow, too often, it comes down to good luck or force of will to access targeted therapies or clinical trials. I’ve been fortunate to hear some of the stories from the ones who ultimately prevail in getting the treatment they need.

Here’s one. A patient in the Midwest, Scott, has angiosarcoma — a type of cancer that grows in the lining of blood vessels. As often happens in these cancers, he was diagnosed very late, when the tumor caused his spleen to rupture and disease spread all over his body. Chemotherapy didn’t work for him — his tumors were growing and spreading like wildfire, to his organs, his bones, and even behind his eyes. He was lucky though. At the elite academic medical center where he was getting his care, his tumor was sequenced, and a mutation was found in the ROS1 gene. There was actually even a drug approved by the FDA for lung cancer that targets that mutation, but there is no data supporting the use of that drug in angiosarcoma. His thought-leading academic physicians grappled with the decision, and they arrived at a conclusion… NOT to try the targeted therapy. They recommended more chemotherapy. His prognosis wasn’t good.

Scott went back to his community oncologist and discussed the decision. His doctor worried that more chemo probably wouldn’t really be better than the two rounds of chemo that had already failed him. Together, they decided to take a chance and ordered the targeted treatment. His insurance authorized the drug based on the molecular diagnosis, and he started it the next day. Within 5 days, his blood labs normalized. In 30 days, his tumors melted away — even the ones behind his eyes. Scott’s disease retreated. Now 6 months later, his disease is stable; still there, but much reduced and not growing.

He could have been dead.

So what happened here?

The technology was there.

The science was there.

He went to see some of the best physicians in the world.

But the system failed him.

It came down to the good luck to have a highly engaged physician, his own will to pursue his laboratory test results and then put them to use, and his own courage to try something completely different.

I share this story to illustrate that the focal point of innovation must shift. The scientific advancement of 40+ years of the war on cancer must continue. That type of discovery and innovation must extend to every therapeutic area possible.

The tools and technology need to get faster, better, and cheaper.

But our continued effort on science and technology aren’t enough. We must innovate the system itself.

A movement is underway. People have become habituated to being at the center of the universe, using the Internet to access their own information and then draw on resources, through software, to get things done. Whether it’s ordering a ride, paying your bills, or even funding a company, “there’s an app for that.” The same approach, where the individual can get their data and put it to use through apps, is coming to many parts of health care and wellness, and it can make the hardest science approachable and useful for regular people.

Patients will accept nothing less.

Lip service of “patient empowerment” won’t be tolerated.

The best part of this movement is that it’s not anti-establishment. It’s pro-person.

I started a company called Cure Forward after a career making and selling technologies for discovery and diagnosis, because I want those technologies to make a difference in every life possible. I truly believe that what we’re doing at Cure Forward is emblematic of the movement of citizen science and patient-powered medicine, and may propel it forward. We’re here to help every patient access the realm of precision medicine, wherever they are.

At Cure Forward, people can get their data, become conversant in their disease, engage their physician with opportunities that that may not have been obvious or visible, and then get to care paths that they can pursue with confidence.

Every story counts. They fuel the movement, and they reveal new mentors for newly diagnosed patients. We want to make sure these patients’ powerful experiences become known. So, if you have seen science make a difference in the hands of patients and their families, reach out here and we will help those stories be heard!

More to come about Cure Forward, but first let’s hear more from the front line, about people’s personal experiences using science to direct their care. Please join me in conversation.

Martin Naley   Martin Naley is the founder of Cure Forward, where cancer patients can directly use their genomic data to find knowledge, community, & treatment options.